Saturday Evening Post

“Executive Summary” on the Medical & General Well-Being Front

Carol’s been doing remarkably well – and all the doctors and nurses continue to be pleasantly surprised by her level of activity, alertness, and good humor (they are all interconnected, of course!). Her energy and attitude are infectious and she no doubt entertains the staff more than the average patient (the only “infection” allowed around here).

Since I arrived Friday morning, Carol’s white blood cell counts have gone down as expected, but her platelets and hemoglobin levels have remained fairly constant. After her last dose of methotrexate tomorrow, (a drug that’s sometimes used as chemotherapy agent but is being used as intentional immunosupression to allow for her new cells to take over), her counts may dip further causing her to be more tired and potentially could worsen the mouth sores (a typical side effect, which she’s experiencing to a lesser degree than most patients at this point in treatment). On the other hand, one of her doctors suggested that she’s doing so well, that she may actually be at a plateau point now and could be trending upwards in the next few days…we hope he’s right …shall see. Her doctors say it looks likely that mid-late next week Carol may be moving on to recovery at either the Hope Lodge or nearby apartments!

Long Weekend Activity Log & Visits

Carol & I have power-walked the halls a few times – have music (and each other) -- will travel. It’s a good thing there are different colored paths in the design of the floor so the nurses know which side to stay on to stay out of our way J. While we are limited by the geography of the Bone Marrow Transplant wing, Carol’s stamina has not so far been limited (today we walked for an hour straight at power-walk speed).

Yesterday we had a number of visits besides the doctors, nurses & techs – Bari the Yoga teacher (we both enjoyed yoga), the Massage Therapist (that was not a shared activity with me!) Physical therapist (didn’t really need her services with this much going on), and the discharge nurse…whew!

The discharge nurse’s visit (one of several that she’ll make to be sure each of her caregivers hear instructions first-hand) to discuss the next step once she leaves the BMT wing at Moffitt Cancer Center, boundaries and precautions (mostly risk of infection, falls), what symptoms to be concerned about & what to do about them. She’ll need to go to the clinic at Moffitt Cancer Center daily to have her vitals checked, blood drawn, and possible IV’s as needed. Once at this phase of the Journey, Carol will be able to take oral anti-rejection meds vs wearing the pump she has right now, and will be able to come and go, including limited outdoor walking (with a mask) as long as she doesn’t spend too much time in the heat or sun – a few tastes of freedom J

Yesterday & today we’ve been busy making beaded jewelry (Carol has WAY more patience for this than I do, and much better at engineering solutions with limited hardware!).

Tomorrow afternoon we’re very much looking forward to seeing our Dad & Joyce and then it’ll be time for “changing of the guards” from me back to Jaime (who hopefully has had some time to catch up over the past week between Sherry’s visit & mine, while thoughtfully ensuring there are some organic food choices in the fridge for us).

-Susan (sister)

P.S. You may have noticed the photo of Carol’s new room decoration – her personalized training gloves that I brought as a symbol of her strength, endurance & resilience. Who knows, maybe after all this she’ll take up kickboxing J